Surviving Anorexia: What I Wish I Knew As The Caretaker

My daughter was diagnosed at 15 with Anorexia. Three major relapses, 17 weeks as inpatient, too many medical appointments to count and now six years later, she is recovered. The journey was harrowing to put it mildly. Thinking back on our experience and what we have learned, I realized there was a list of things that aren’t told to you when Anorexia develops and the long journey through recovery. You find them out yourself the hard way and often alone. Some come as a surprise, others you realize are normal but you didn’t think about, because so much else is claiming your time. Even medical information you will not be told and have to research yourself. I’ve used the term care taker to cover everyone who cares for someone with an ED illness. I’ve used the word child as it related to us, but it applies to over 18 too.

The parent or care taker will often be the one who sees the illness develop. Trust your gut instinct and seek help. Don’t wait for the ‘phase’ to pass over. It won’t.

It’s not a normal teenage diet, if it’s out of character, is intensive/obsessive, drops most food groups and there is fear about foods.

Sudden decisions to be vegetarian, vegan, or sudden developed food intolerance/allergies may be part of developing an ED. Thoroughly check these out and do not regard them as ‘just a teenage fad’.

You are often the front-line and sometimes only line of care. Funding and resources can make it very difficult to get what you may need for treatment and recovery.

This is going to be a long journey. You may not just get well after the first ’round’. It will take years in some cases.

You need to treat yourself for self-care just as much as you care for your loved one. It’s essential to survival.

Your marriage or significant relationship will be tested to the max. Take care of it.

This is NOT your fault. It’s not your parenting or your family. ED’s are an illness that are a complex ‘perfect storm’ that have many tentacles for development.

No one will tell you how exhausted and OVER it you will be. How refeeding is draining for you as well as your child. That you will have a list of appointments on a weekly, fortnightly, monthly basis that you might have to drive miles to – and juggle into normal family routine.

You will find yourself up against schools, doctors, clinics, friends, family. Most have a ‘warped’ idea of eating disorders. There will be stigma and wrong beliefs. You have to explain and educate just to get the care and respect your loved one needs.

You will need to read up on symptoms, treatment, research. No one else will teach this. As you are the front-line you need to know this stuff.

There are often not enough resources or funds in place to provide what your loved one or you will need. That includes treatment centers and hospital beds, ED trained medical/counseling therapists. You may have to get creative in terms of finding the right help.

You are not alone – even if it feels like it. There are many of us on the internet, Facebook and other medias who are traveling this journey and can support you.

Your child will become a totally different person – loud, rude, maybe even violent, abusive, and manipulative. This is the illness - not your child. Your child is still underneath – vulnerable, lonely, scared and very, very ill.

When medium to strong recovery is reached, your true child’s personality will start to reveal itself again. Hang in there.

Logical, clear, rational thinking will not be part of your loved ones thinking when the illness is in ‘full residence’ and skews thinking process. They are not able to eat, care, stop or save themselves when they are very ill.

Medical professional won’t know it all. Medications are trial and error. Sometimes many medications may have to be grouped together before they work.

Relapse may happen. Prepare yourself for this reality, should it occur.

Relapse is every carer takers nightmare, but the fact is, it can be monitored and cared for quite closely by an aware and caring team. You can catch it early. You can keep fighting.

Correct weight does not mean you are ‘cured’. KEEP YOUR TEAM AROUND FOR A LONG TIME.

Recovery is a very messy journey with lots of ups, downs, corners and relapse.

If your child has Asperger’s it will make the recovery treatment harder and some treatments will need to be adjusted.

There will be a ‘before ED’ and an ‘after ED’ state for your family. It will affect everything and the way you live and think for years to come – even when your loved one is fully recovered.

Eating disorders are a family illness. It will affect all the members and relationships within.

Hope is real and full recovery is possible. Don’t give up. Fight for every bit of care and funding you can get.

Recovery and being recovered is worth the journey through hell. Keep fighting!